My personal adventures and lessons learned while beating the shit out of Stage 3 Melanoma

4 month Update & Cancer Camp

I can’t believe another 4 months has flown by since my last set of scans. It’s amazing how time flies when you’re not enduring state of the art immunotherapy treatment that makes your immune system try to kill you… but in a good way, (most of the time). Welp, lots has happened during the best season of the year (frisbee season) but it just ended a couple of weeks ago and I’m just starting to crawl out of the black death hole of depression that post-nationals and the daiquiri deck leave you in to die. It turns out that it’s harder to shake that depression when you lose in the finals and you threw a turnover during a pivotal moment of the game… ANYWAY, I digress. I’ll get to the stuff you guys actually come here to read:

Scan results

Before I get into all of the nitty gritty, I’ll just tell you all that my most recent set of scans were CLEAR! This means I am still at NED (no evidence of disease) status. This is great news and nothing changes since my last scans, except for that my oncologist had a little mix-up and told me to come back in 3 months instead of 4. It still bothers me that there is no guarantee that the cancer won’t come back, and that the chances of it returning lie somewhere between 40-60% but every day it gets easier to deal with this reality. Also, everyday there seem to be new breakthrough’s in research for Melanoma. About a week before my scans I received a letter from my oncologist that would have changed my treatment had it been this time last year (if you recall, we did change my treatment this time last year but it would have been different even still). Since new study results have been published, they no longer treat patients at my stage with Ipilimumab or interferon. There is a new BRAF targeted treatment (BRAF is a special melanoma gene mutation that my particular tumor had) as well as another novel immunotherapy agent called nivolumab, both of which are safer and more effective than either of the treatments I received last year. My oncologist and I laughed about this together, which shows you how far I’ve come. At this point, I am still NED so it wouldn’t make sense to start another treatment now. But I do know that if Melanie ever decides to show her ugly face again, there are a number of punches I can throw at her.

I don’t know if it was because I was stressed about school or excited about Camp Koru, but unlike my last scans, these were pretty painless, emotionally speaking. I didn’t shed a single tear, and it’s not like I was trying to fight it anyway. I didn’t feel any more or less confident than any other time but a weird sort of calm just came over me while I was there. The only issue was the CT technician told me I had just 40 minutes to drink the 2 bottles (900mL total) of vanilla barium sulfate (which is not a lot of time when you account for wanting to gag after every sip). At my attempts to finish quickly I plugged my nose and tried to chug a whole bunch. Big mistake. I have never been so close to projectile vomiting, and not… However, knowing that I was still going to have to drink it again if I tossed it up, I don’t know how I did it, but I kept it down. Crisis averted. Big props to Lege for talking me off the cliff a few times. And in general, Lege has been the most amazing support partner. Without asking, he knows what to say, what to do, how to act around me, especially when I get all canceremo.

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Drinking vanilla Barry

CT Scanner!

Camp Koru

So when I first was diagnosed and I was looking for support, I did what any millennial would do and joined a facebook group for people with melanoma. Huge mistake. It turns out in this group 90% of people posting are 60+ year olds posting pictures of their moles and other naive folks commenting on said pictures saying “get it cut out now!!!” and other unhelpful things, etc. The other 9% are people posting about their horrible experiences but in the end saying they know Jesus will find a way to save them. To each, their own, but obviously I was not going to find anything useful from this group…. UNTIL one random day some angel from heaven (the 1%) posted a link to free resources for cancer patients. I randomly clicked and found a few camps or retreats. None of them seemed good for me AND THEN the very last one was titled “athletes for cancer.” I was like YUP! They have since rebranded and now call themselves camp koru or project koru (good decision guys, because it sounded like athletes were giving cancer the thumbs up). So this camp is targeted to young adult cancer fighters/survivors ages 18-39 who want to find healing and connection through sports and outdoors adventures. Particularly learning how to surf in Hawaii.

This. Could. Not. Be. More. Perfect. For. Me.

As you know, the one thing that has been missing for me is finding other like-minded individuals who have experienced similar traumatic cancer events and ideally learning how to heal together via human connection and shared experience. It’s not common for 20-30-40 something’s to have to face our mortality this early in life so those that do, I would think may have something to talk about that “normal people” won’t really have insight into. Also, initially when I was having difficulty getting my strength back after treatment, I was told it could take “years.” I had never imagined a life for myself with out sports and ultimate and the thought of not being able to play at my previous high level with all my TEAMmates, was depressing and terrifying. It turns out I picked up lost ground quickly and this season ended up being one of my best seasons individually speaking. But I know I am going to learn and grow so much from this experience.

Any who, I am SO EXCITED. Also I am currently on the last leg of my flight from LAX to OGG (Maui).*** I gave myself a day to recharge and get over jet lag at a hostel on a beach. Then tomorrow I’ll be meeting 14 other cancer warriors around my age for a week of surfing, healing, paddle boarding, hiking, yoga, and all you can eat organic goodness. Feel free to check out the website for camp koru, and would encourage you to donate so people like me can attend these camps for free (except for flights).

****UPDATE: It’s been a couple nights since I’ve had Internet access buuuut I just had my first night with everyone at Camp Koru and it’s amazing. I’ve already had so many wonderful conversations and feel so connected with literal strangers. I’m the only melanoma kid in a school of breast cancer people (plus a few other cancers) but it’s already amazing. We all need this so badly. Nobody prepares you for life after cancer and it’s just so great to talk to other people who have been going through the exact same issues.

Life Updates

Ultimate/Brute Squad

This season was a ton of fun. Brute Squad had lots of success. For me, it was my first year being a permanent O-liner, which was lots of fun. I got to throw the disc a lot more than when I was on D-line. Nationals were in the storied Sarasota, FL this year. We made it all the way to the finals, but then lost to Fury on double game point. Huge bummer. But now that the depression has lifted, I am more motivated than ever to crush in 2018. Also, we earned a bid to worlds! So we can potentially win the world next July! Unfortunately instead of worlds being hosted in cool places like Australia or Perth, like it has in the past… Worlds in 2018 will be hosted … in…. Cincinnati, OH. Another huge bummer…. But at least flights will be cheap. No offense to any Ohioans out there.

Enjoy some pics from the season below. Apologies for the atrocious formatting, the WiFi is so bad I could only add pics from my phone so my editing tools are limited. Instead of arriving captions for all them I’m just gonna have you ask me for the back story if you’re really curious

Grad School/MGH IHP

I am currently in my 2nd to last semester of grad school. I have two amazing clinical placements and I’m learning SO much. One of them is at Neurosurgery @ Lahey Medical center in Burlington, MA. The other is with Elder Service Plan, which is a PACE program servicing camberville – Medford area. Can’t believe I’ll be graduating in May but I also cannot wait to be done with school and be out there taking care of people.

Oh, in January I’ll be going on a medical service trip with a few colleagues and professors at the IHP. We’ll being working setting up small medical clinics at Bateyes in the Dominican Republic. Bateyes are where many Haitian sugar cane workers and their families live and they have no access to healthcare otherwise. That should also be a really eye opening and hopefully rewarding experience.

As for camp Koru – I’ll assuredly be posting daily on facebook and instagram, so feel free to follow me along there.

5 thoughts on “4 month Update & Cancer Camp”

Always doing amazing things! You might also want to look into First Descents – its another camp/adventure seekers who are cancer fighters/survivors. My friend Ashlee went 2-3 times as a participant and now works with them! Have an amazing time in Hawaii!

oh my- I just found your page after some recent desperation sent me to the internet to find out what others were experiencing with joint pain from immunotherapy. Your writing is fantastic: fun and informative and sassy- please don’t stop! I have the same diagnosis as you and finished 18 rounds of Keytruda this summer and am still so sore! My oncologist does not seem to take my joint restriction (rt hip and rt sholder) seriously because I can still run 8 miles and swim. But I am slower and run less distance and can’t even move side to side (no more tennis or dance or horseback riding). I am 44 and active but haven’t been on a team since college. Please tell me if you have experienced significant joint pain, arthritis, movement restriction that onset without injury and after months on immunotherapy. I would appreciate it. I too want some of my former self back and have been told it may take years- WTF!

Hey Kathryn! So glad you like my blog, when I hear from people like you, it’s the most rewarding feeling ever.
So I only made it through 2 infusions with ipilimumab before I had a liver injury/auto immune hepatitis and had to stop treatments. I occasionally have hip and knee pain but I don’t believe this pain is from immunotherapy treatment…Actually I attribute this pain from general osteoarthritis from being an athlete my entire life and just overusing this joints. Plus I never know when I should stop and usually push through things I shouldn’t (sound familiar??) The things I notice most after treatment is random fatigue regardless of how in-shape I am. When I have hip and knee pain I take 400 mg of ibuprofen before I exercise and it usually does the trick. Have you seen an orthopedist? It’s possible your pain is coming from overuse injuries and not from treatment. I would suspect you;d have bilateral joint pain (pain on both sides) if it was from treatment. However, I haven’t researched joint pain from immunotherapy at all so I could be completely wrong. 18 rounds is a lot of rounds of immunotherapy and 8 miles are a lot of miles to run! I would encourage you to seek out some other health professionals (PCP or orthopedist) for your joint pain and maybe request an CRP blood test for inflammation. It took me several months to get back to my normal physical self and sometimes I am still tired randomly. Best of luck and let me know how it goes!